Advice needed from all you experienced ones

Discussion in 'Younger people with dementia and their carers' started by annesharlie, Jul 25, 2007.

  1. annesharlie

    annesharlie Registered User

    I know there is a wealth of knowledge here, from many all over the world who are further along this difficult journey than I am. I wondered if there is any practical advice for me at this stage - things you may recommend, or wish you'd done differently. My friend, Linda, who's husband died from FTD a couple of years ago, told me not to make the same mistake she did - she was the only caregiver - with little or no relief, and it got so that he'd even be very upset if she went to the bathroom for a few minutes. I appreciated hearing that and thought there may be other wise suggestions from all of you.

    To fill you all in, Ron is recently diagnosed with FTD at 52 yrs old. He's functioning still very well, but unable to cope with finances, cook, initiate activities much, work or drive. I can still get away and leave him for a few hours at a time. I'm 45 and work from home as an artist.
  2. Skye

    Skye Registered User

    Aug 29, 2006
    SW Scotland
    I'm afraid people with AD or VAD do become very clingy. It's not surprising, their world is such a confusing place, they want to hold on to the one person who's always there, the security blanket.

    John has carers in for two sessions a week, and goes to daycare for one day. He gets upset when I tell him (he doesn't remember from week to week), but he's actually fine with the carers and daycare.

    But some people just will not accept either, and that must be so hard.

    I think the answer is to try carers at a fairly early stage, when they are still able to adapt, but be prepared for it not to work. After all, we are carers, and if something is causing distress, we shouldn't continue with it.

    Not much help, I'm afraid, but there really are no answers. You just have to try things and see what works.
  3. blue sea

    blue sea Registered User

    Aug 24, 2005
    I would agree with the advice to try to get your husband used to other carers, even if only for very short times. It is very important too, I feel, to try to maintain some of your own friendships and activities outside the home. In the end you will cope better as a carer, as the illness progresses and becomes more challenging (hopefully many years ahead), if you have been able to refresh yourself in this way. It is very, very lonely being a carer in the later stages of the illness and the person does become totally emotionally as well as physically dependant on you. You and your husband are so young for this to happen to you. My heart goes out to you both.
    Blue sea
  4. Margarita

    Margarita Registered User

    Feb 17, 2006
    Yes I found that happen with my mother , when her mobility was better , she was like my shadow , It was good getting my mother use to other people, going to day-center, but that did not stop her from following me , being my shadow , It just gave me a break from it .

    My mother went on medication for last stages of AZ , that seem to take those symptoms away a little help in her accepting help , the medication help me to get her in to Day-center & get a carer in to wash her , but of late its starting again, if I am out of her sight for a Min she looking for me , wanting to know where I am .

    I have to tell her my every movement
  5. janew

    janew Registered User

    Mar 28, 2005
    I appreciate exactly what your friend Linda means - I think she is so right. It has taken me 5 years to get to where I am now.

    I feel so lucky to have the care I need - my mum goes for Day Care at a EMI Home, every weekday and I am able to work full-time with no worries how my mum is, as I know they would contact me if there was a problem and she goes into the Home for respite when I need a break.

    I just could not accept I needed help and got upset when people told me that help was there if I just asked for it - I think I just thought that if they saw that I couldn't cope they would have the excuse to put my mum into care and I would have the decision taken from me but it has worked the other way for me - they don't pester me and I can contact them when I have a problem.

    I know each location is different but just wanted to let you know how I have found the system so far.

  6. Taffy

    Taffy Registered User

    Apr 15, 2007
    Your friend Linda has given you some valuable advice I think that any extra support you can access is worthwhile. I know a lady who's husband died at 49 from Alz and she thought that she should be able to manage alone especially because of her young age, she ended up a real mess. This lady now is a volunteer for dementia support and also shares her experiences at public forums she is a real advocate for the importance of respite. It is sad that you have to face this at such a young age. You'll get much support here and I wish you and Ron happy times ahead. Taffy.
  7. annesharlie

    annesharlie Registered User

    Thank you all for your responses - it seems very clear to me that it will be necessary to involve caregivers quite early on. I don't feel ready for that just yet, and certainly Ron would be very upset - perhaps I can revisit the idea in the winter when he won't be able to go out on the electric bike.

    I am being very sure to see my friends and have times alone with them - if Ron is used to me doing that it won't be as hard to carry on. I need it for my sanity as there is very little conversation between us, I need to connect with other people.

    Thanks again for your kind wishes.

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